Showing posts with label my son. Show all posts
Showing posts with label my son. Show all posts

Sunday, August 15, 2010

THE PRINCE OF COMPASSION


The night my son collapsed with schizophrenia, I went to the shore. My heart was aching; the familiar, resigned stoicism with which I had endured so many crises was creeping over me again. I was bracing myself for certain heartbreak, clinging with all my strength to the comfort I found in the sound of the ocean rolling in, wave on endless wave, upon the sand.


Pacing up and down the water's edge, nervous and shaking, I thought of my gentle, happy-natured son as he had been when he was little. Jeff was my third child and he was born laughing. His disposition had always been sunny. In our noisy house of four children, he was my quiet, sensitive one, the one I felt was most like me.

Jeff is an Old Soul, one who lives gently and kindly on the planet. He seems to have brought wisdom with him from wherever he was before he came to me. Now that laughing, tender little boy was a lean, fragile six-footer, seventeen years old and in the psych ward.

I had just moved to Tofino, and was working to get us re-established. Apparently, he had run out of my mother's house in Vancouver, where he was staying for the summer, and raced through the darkened night-time city streets to the hospital, where he had checked himself in.

He was psychotic, suicidal. They needed me to sign the consent forms, they could not begin treatment until I came.

*** *** *** ***
I didnt know what to expect when I got to the hospital that first time. In the modern front lobby, I was directed to a separate ancient-looking building across the alley in the rear. The psych ward was old and dreary, its nicked walls needing paint. I walked up the scuffed and shabby stairwell. It felt like the abandoned ones lived here. At the nurses' station, asking for Jeff, I felt them sizing me up, with my frizzy hair, thrift store clothes and natural temerity. My seventeen year old son had broken down, was in desperate shape. What had I done to cause it?

I signed the forms. I asked to speak to the doctor. He would be in this morning, they told me, pointing me down the hall to Jeff's room.

Peeking into the darkened room, I saw the usual evidence of Jeff's occupation: clothes and belongings strewn all over the floor, blankets ripped off the bed, dirty and clean clothes and wet towels all together in a tangled heap.

On a bare mattress, wrapped, head and all, in a blanket, was my son.

"Jeff," I called softly, and his shaggy head burrowed out from underneath the blanket, long tangled reddish-brown curls in disarray. He smiled, the same big smile, our eyes met, his same blue eyes. He got to his feet, tall and thin and tousled, and we hugged. I felt relief. This was still Jeff.

We went down the hall to an alcove, where two chairs sat by a window.
"What happened?" I asked.
"I couldnt take it any more. I needed help."
"I am so glad you did this, that you came for help. That was a really smart thing to do."
He nodded.
"What do you want them to do for you?"
"I want them to make it stop."
"Make what stop?"
"It's like a bad trip that hasnt stopped. I've been scared all the time, it's like living in a nightmare, like being in hell. There are voices, clamoring and shouting. It's scary."
His eyes turned on me once more. When he was little, he had the round untroubled blue eyes of an angel. Now they were haunted by the visions of his waking dream.

"Is it from the drugs?" Jeff had taken LSD fifteen times the previous winter, but I hadnt found out until he was already in trouble.
"I dont know. I havent done drugs for six months, but the last bad trip never stopped."
"Well, you're in the right place." He nodded. "They'll be able to help you. We'll get through this."

I felt a difference happening, the beginning of real communication between us, in the midst of a crisis, a breakdown. The son I thought I had known was now a son who was openly suffering. All the hidden demons lay revealed. My response was to roll up my sleeves and muster all my strength to help him. We would talk our way through the next twenty years, but we didnt know that then.

For now, my son was tired and retreated back to bed, pulling the blanket up and over his head. While he slept, I paced the hospital halls and waited for the doctor.

I saw people in various stages of depression, locked within their lonely worlds of pain. People of all ages were making their solitary treks through the labyrinths of their own minds. My son now inhabited this landscape. It brought very close to home the fragility and, at the same time, the incredible resilience of humans, that in a nanosecond, any one of us might topple over into that land of rain-speckled windows, tears and no more hope.

My son, brilliant, talented, a writer, a mystic, a dreamer, a musician, a lover of life, with all of the suffering soul and sensitivity of the creative artist, had walked the fine line between daybreak and hellfire, and had fallen. He now paced these drab corridors, his hours marked out in paper pillcups, naps and hospital trays. Where would his beauty ever find a place to land, in halls so bleak and bare? How would his tender heart find its way home from this land so strange and new? And where was home, now that I had packed it up and taken it away?

How had I helped to bring him here? And what could I do now to lead him safely out?

*** *** *** ***
Dr P came rushing in, white hospital coat flying, and raced down the hall. I lurked around the nurses' station while he ran in and out of rooms, conferred briefly with nurses, pored over medical files, barked short commands. I hovered, saw the nurse telling him I was Jeff's mother. He glanced over, sizing me up. Once more I felt my general inadequacy, both as a parent of a boy who had fallen apart and the responsible adult who somehow had to deal with the situation.

Finally, he called me into a small office. The doctor peered at me, shuffled some papers, then began.

"Jeff is suffering from a psychosis, a psychotic break. This may or may not be drug-induced. It may have happened even had he not done drugs. Jeff is going to need medical help, his medication has to be monitored. First we have to get him stabilized. There is the possibility that it may be schizophrenia. In any case, the treatment is the same. We will try him on anti-psychotic medication and will try to stabilize him."

"I hope this is drug-induced then." I said. Schizophrenia was an illness of intense suffering. The thought of my gentle son suffering for months, perhaps years, was too starkly terrifying to consider. I wanted the magic pill that would restore my son to himself, so we could all go home and get on with our lives.

It is good we did not know, then, the long road that lay ahead of us. Life is merciful that way.

I still had questions but now the doctor leaped up, rushed down the hall and was gone.

I left some money at the nurses' station for Jeff, then tiptoed back into the room where he lay sleeping. On his bedside table was a scrap of paper, with a few lines written in Jeff's distinctive, quirky script, a sort of spikey printing with jagged downstrokes. I read what he had written and my heart turned icy with fear.

"I am Cloud.
Someone blow me away."

I walked out of the room, down the gray hall, the gray, drab stairs, out into the noisy brightness of the city street. Life roiled around me, normal and noisy, while my son lay in the psych ward, his life hanging in the balance.

I couldnt get the words out of my head and still recall them frequently, two decades later.

"I am Cloud.
Someone blow me away."

*** *** *** ***

Next day and many, many times after that, I went back to the hospital, to the city, to Jeff's side. I remember walking down the rain-washed dark city streets beside my tall, guant, suffering son in his long black trench coat, as he cried.
"It will get better," I'd say.
"I'm afraid it never will."
"It will." It had to. "I couldnt handle it if anything bad happened to you."
"I know. That's why I'm still here."

*** *** *** ***

Jeff writes some of the most beautiful poetry I have ever read. He composes beautiful classical musical fragments; one wishes he were able to complete the entire opus.

All of his beauty and loneliness is evident in his music, all the sensitivity, the genius that somehow got its wires crossed, his youth which should be flowering, on hold, as he sits alone at his keyboard and sings into empty rooms where no one hears him.

Except me.

He phones me every day or two, sometimes in tears, from the psychiatric group home where he has now lived for a dozen years. We talk, we say 'I love you', we hang up. I picture him, drifting back to his room, his messy sanctuary, lying down on his bare mattress, bedraggled blankets strewn all over the floor. Awash on his boat of pain, steering his solitary course towards a horizon he cant see, no route markers, no compass, no hope, no dreams, no one to hold him and tell him it will be all right. Truly, he is the loneliest person on the planet.

He is as in-the-moment as a small child, and as lonely as a coyote howling at the moon. He calls himself Jeff Siddhartha Crazy Horse Marr. He has the gift of appreciating the little things. I recall buying him a little ninety-nine cent violet and how tenderly he carried it home. Peeking into the bag, he whispered, " Come home with me." And when we got there, he made it a little altar with a soft piece of cloth, so its protruding roots would not be hurt.

Though Jeff is one of the poorest of the poor, his generosity is legendary. He gifts his brother and sister-in-law on their wedding day with his favorite Nein Young cd. "My gift will be my ambassador," he smiles.

When I visit, I shake my head with mixed chagrin and pride as we walk down Granville Mall together. Jeff, in his raggedy clothing, impoverished, cannot pass a homeless person without emptying his pockets - those pockets I have just filled with hard-to-come-by cash. The Prince of Compassion, freely sharing his largesse.

"How're you doin', man?" he asks, dispensing coins and cigarettes. "Take care."

Saturday, July 17, 2010

HOME FROM THE CITY

photo from flickr.com/photos/Thom Quine

And a lovely city it is, if one must be in a city. I promise myself this, the next time I am there, I will have my new camera with me - the one I havent had time to buy yet! Since my last camera broke, I have missed taking pictures.......time to get another one and get back in the game.

I would have loved a picture of Jeff with his bald head. New hair, just a blonde fuzz of it, like when he was a baby, is growing back already. Very cute. Under his battered old leather hat, his eyes look out as blue and honest - and PRESENT - as they always have.

When I got to the hospital, he was already in his chair, hooked up to the chemo. I am always amazed at the oncology ward. One would expect it to be a depressing place, and certainly some of the people appear very ill and are in bed. But, generally, the ones who have graduated to the tilting back chairs are very chatty and positive. We exchange snippets of stories, symptoms, side effects, chat and laugh. The staff seem especially suited to where they are working. They must see a lot of very sad stories. Yet the main feeling in that ward is hope. Everyone is doing what they need to do to be well. There is great humanity in the people in that room, all helping each other through the hard stuff.

He is nearing the end of chemo and is tolerating it very well. He had a full body scan this past week.

"Dr. S. says everything is looking very good," he tells me. "I have the two chemos left in August. Then after that I will have one three-hour chemo every three months for two years." He sounds a bit daunted by that, but adds, "He says there will be very little in the way of side effects."

"Well, that's good," I say. "Two years hey? But three hours once every three months - you have come through this treatment so well, that is doable, right?"


"I guess so."

I am praying this will keep it at bay. They say the type of lymphoma Jeff has is not curable, but that it is highly treatable. They can keep him going for a couple of years - when the cancer comes back they will repeat the treatment.

However, for now we are focussing on this series ending, and life returning to normal, as normal as it gets for Jeff.

"I'm having some difficulty today," he tells me. "I have a lot of fear coming up."

"You do? What of?"

"I'm afraid of my mind," he says. I dont show it, but this amazes me. He has never said this to me before.

Jeff has been given a double whammy. He was stricken with schizophrenia when he was seventeen and has suffered with it now for twenty years. The last few years, he has gained a better awareness around how to handle the thoughts that torture him. But still, on a daily basis, he wrestles with the contents of his mind.

"I'm afraid of getting run over by a car, of all kinds of things........."

"A lot of people have that kind of fear," I reassure him. "But maybe not always to the same degree you do. Maybe part of your journey will be learning to make friends with your mind."

"That would be good," he says. "I'm afraid of losing control. But I actually do have a lot of control," he reminds himself.

"You do. Look how far you've come and all you've been through!"

He perks up. We walked down to the seawall at Ambleside twice this visit, yesterday afternoon and again this morning before I headed for an afternoon ferry. The minute we sat there, with the sound of the waves rolling in, the smell of the salt air, the sun on our faces, we both felt a blessed peace. I told him, "If I lived where you do, I'd be down here every day!" He is two blocks, if that, from the seawall. The water glitters before us, the sun streaking it with silver. The waves roll in and in and in, to the rocks almost at our feet, where we sit slightly above, on a wooden bench. Big ships lie at anchor out in the bay. Small sailboats bob about. Every now and then a seagull or two come keening past, their raucous cries making me smile. I love seabirds.

The trip was tiring for me, especially yesterday. I had been tired before I set out, so by the time I travelled from here to the city, then bussed across the city to the hospital, walked the several blocks from the bus stop, went back home with Jeff in the afternoon, walked down to the seawall, then travelled out to New Westminster by skytrain to where I would spend the night, I was exhausted. I began to feel strength fading at Jeff's and told him I was going to have to start making my way. When I got off the skytrain, I felt a surge of weakness come over me, like I could barely move my legs. By sheer will power, slowly, I put one foot in front of the other and climbed the six blocks uphill to where I would spend the night. But after a good sleep, I was recovered enough in the morning to carry on.

This morning, early, as I sky trained across the city, my thoughts were busy. Sky Train reminds me of the book by that name writen by Canyon Sam about what has happened to Lhasa in Tibet since China took it over. They have built a train right into its heart and now what was a holy place is a huge Chinese marketplace.


However, the skytrain in Vancouver is one of my delights when I am there. That and the seabus trip across to the North Shore. I looked at all of the towering buildings. Each window hiding/revealing a life or lives being lived within. So many stories. I gazed at the faces on the skytrain. So many STORIES! Each one likely as impossible to believe as mine. We raced across the east side of the city, where I once was young and so unhappy. Across the west side, where I would walk and dream my dreams of a freer future (which came true!) To the seabus. As we pulled away from the dock, to cross the channel to the North Shore, I saw, on the top of a tall building, a row of brave, dancing little pine trees lining the periphery of the rooftop. I felt as happy with my fifteen minute seabus ride as any wealthy tourist on the huge cruise ship docked beside the White Sails!

Jeff and I had a good visit this morning. He was feeling a lot better today and hadnt had any side effects at all from the chemo. Remarkable! I cant get to the city in August, but promised him a visit here in September to make up for it. I have made it once each month for three months. But in August it wont be possible for me to get away. However we fasten our eyes to September. The weeks fly fast!


I had the ultimate ferry for the trip back to Vancouver Island........seven decks tall. On the upper deck there are smaller closed lounges, with chairs all facing out to sea for quiet watching. The restaurant on the top deck had floor to ceiling windows for our viewing pleasure. There was a lecture by a naturalist on one of the outer decks. Wow. Tourist season has B.C. Ferries rolling into high gear. Best ferry I was ever on. It is called Coastal Rennaissance. If you get a chance, book your trip on that one! My mini-Cruise:)


Off the ferry, driving up-Island, past Cameron Lake, through Cathedral Grove, our old-growth forest full of sleepy giants, over the Hump, and out Beaver Creek. Home, with happy dogs running to the fence to welcome me, fresh blueberries and greens and a GLORIOUS bouquet from the farmer's market left here for me by my sister...........and my neighbor just brought me a piece of fresh salmon. It is good to be home.

Here is Jeff, in his jester's hat, before his hair fell out.........




And here is my humble little home, with its big sprawling yard. You cant see them in this photo, but my prayer flags are flying above the iris bed. I am always so grateful, after being in the city, to have all of this green space around me. I am soooooo lucky!


Out back is more wild space, that runs down to a creek, which has a resident bear, who fishes it for salmon in season. He ambles up and down at night when he gets hungry, hoping someone has left their garbage out. We dont tell the wildlife people. We like him! He doesnt bother us. One night in winter when it was sleeting out and truly miserable, I heard him howling and crying down at the end of the road. He must have been cold and hungry and very unhappy. Poor bear! I so wanted to take him down a blanket!

See my covered porch? That is where my porch swing lives, where I sit sipping tea and watching hummingbirds come to the feeders. I recommend a porch swing, it does wonders for inner peace:)


For those of you who havent already read it, here is a poem I wrote on my previous visit to Jeff in the city. It will tell you who he is, in his own words, better than anything I could write:

"I feel like an angel,
burning up from the inside,"
my son tells me.
We're in the oncology ward.
Chemo is
drip
drip
dripping
into his arm.
His hair is wisps now,
across his bald head,
like when he was a baby.
His eyes are still
as blue and true.
"I view reality with perfect clarity,
but I've become aware of another dimension.
When I look into a flower,
I see the whole universe.
I can hear the earth
groaning in ecstasy
and, in my body,
I can feel, with my heart of compassion,
myself groaning along with it.
It's a good thing," he smiles.
The chemo
drips
drips
drips
into his arm.
My son is an angel,
burning up from the inside.

And now I am going to make a cup of lemon ginger tea. Life is good and it is good to be home!

Thursday, July 1, 2010

Oncology 101


June 4, 2010


"I feel like an angel,
burning up
from the inside,"
my son tells me.
We're in the
oncology ward.
Chemo is
drip
drip
dripping
into his arm.
His hair is wisps now,
across his bald head,
like when he was a baby.
His eyes are still
as blue and true.


"I view reality
with perfect clarity,
but I've become aware
of another dimension.
When I look into a flower,
I see the whole universe.
I can hear the earth
groaning in ecstasy
and, in my body,
I can feel, with my heart
of compassion,
myself groaning along with it.
It's a good thing,"
he smiles
his unchanging
smile.


The chemo
drips
drips
drips
into his arm.
My son is an angel,
burning up from the inside.